Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

am i just dying?

I've been dx'd w UC for 11 years. The last 7 years of my life have been perpetually painful with intermitten flares, then rounds of pred, then outrageous emotional reactions and physical complications.

I fell bad all day, everyday, from the stomach pain, to the fatigue, to the embarressment and interuption of my life, and inablity to lead a normal and productive life, while being shunned by disability and not supported by GI doc of last 5 yrs. (long story, i had a good one before i moved) plus constand foggy head and can't think straight.

how much of this is typical for the rest of you?
I know, some of you have it much worse, but i just want to know. its now like i have good days and bad days anymore, they are all bad days, and i can't even get through a 3 hr a day pt job, without pain meds, which don't help with my foggy head.

An I just dying? Is there more wrong with me than UC? besides the Bipolar?

I think after a while, when you have a disease such as this, the feeling of defeat is just inevitable, but you don't have to let it last. You mentioned bi-polar, this is probably not helping once the &quot;normal&quot; emotions of defeat danced into your being. The key though, is to not let it win you over. Keep wanting to win, to beat it to be better, to live! If you let it suck you in, then the hole will just get bigger.

If we don't believe that it will get better, then it won't. More importantly, if we don't believe that it will then what is there to live for? If it's God, or your kids, your husband, your partner, whatever it is that gives you faith or strength... it sounds like it's time for you to cash in on some of that good stuff ;)

Mindset is a big factor in UC and CD, if you are not happy in your head, your stomach will follow. Get a new job perhaps something that you can do from home until you are better. Get a new Doc, decide you want and desire to live and succumb to all these symptoms, and get back on your darn feet!! Get some probiotics and make an effort to do at least one thing that makes you smile each day, no matter how small.

So... are you just dying... Well, yeah, we all are, we all die. But it's the time that we have left that keeps us going, not the time that is dwindling passed us. :)

Very well said Runner!
I try to live by the corny mantra: 'I have Crohn's but it doesn't have me.&quot; Well for the past year and a half, this hasn't been working very well, there are days, months where I feel it has me. Every day is a battle, but I say bring it on! I believe it can get better. I keep making changes and will continue to make whatever changes are needed to keep going.
Remember, we ALL have a terminal disease called life. Make it happy and peaceful.

Very well said!! There is the definate mind/gut connection and if you don't try to keep a positive attitude, you become your own worse enemy. I have a host of other physical problems, too, and am disabled. I also lost my only child to suicide last year.
I don't minimize any of it, but I refuse to let it beat me--I will go, and do as long as I can and be the best that I can. Not to say we all don't have weak moments, but we just can't &quot;stay&quot; there. Good luck to you! and maybe get a 2nd opinion! Hugs, Judy

Hang in there. That feeling of defeat crops up for everyone, even without illness, and it comes and goes for some of us with illness more than others. But I think it's just as powerful and potentially damaging no matter how often, but mainly only if we let that feeling overpower us. I always remind myself that as strong as those negative feelings of defeat are, they are in fact only feelings and therefore they don't define me, nor are they the truth. Then I just try to acknowledge them, say to myself it's OK to have that feeling, but that I want to let it go now, and then I try to just say goodbye to it and move on to a different feeling, one that might actually be helpful to me in the reality of my life. Like hopefulness that things will improve, happiness about some part of life that I enjoy, or strength that I've called on before to do some difficult task, or pride for having accomplished some of those things, or love for someone who cares. I know it's really hard sometimes, and I've had my days sobbing on the couch, and I know that's OK, too, but I know if that's all I allow myself to feel, I'm never going to be physically better than I am now, and most likely I'd just get worse. I really hope you get a respite from feeling so bad all the time.

sorry to hear how badly you've been feeling. when i read your story and all the others who are taking soooo much medicine and are still doing so poorly, i can't help but wonder if any of you with UC have even considered or researched the option of getting a j-pouch.

I was so sick last year (hospitalizations and tranfusions) i felt like i was dying. then, after much consideration, i had my diseased colon removed. that was in march and i haven't had a single day of that kind of pain again. i am so happy and healthy. i'm back in school (8th grade) and a starter for my volleyball team. I haven't felt this good in years.

after losing more than half of my hair from malnutrition before my surgeries, it is all growing back and all i take is a liquid multi-vitamin and some probiotics.

at first, surgery seemed so drastic, but it's the best decision we ever made.
UC CAN'T STOP ME!!!

You will get through this! I was where you are now not two months ago! I've been suffering for years. When I thought &quot;it couldn't get any worse&quot; it managed to get worse. I was defeated and felt like ending my life. I was tired of hurting and fighting a battle I couldn't win.

After I went in for emergency surgery, the surgery in my mind was going to at &quot;least&quot; make me better for a short while. Turns out, they took much more than they originally estimated, and I was so sick, I thought I was just going to die. At times, I wanted too. The doctor's seemed as clueless as I felt, but there was still a part of me that kept fighting, kept hoping things would get better.

It took 5 months to stabolize after the surgery, and the ONLY thing that has helped me is morphine and breakthough pain relievers. At least now when I look back, that WAS the worst of it, today is hard, but yesterday was harder.

My point is, no matter how down you become, there is a reason to fight. You may start feeling better or they might come up with a cure, you just don't know. When your down and troubled and you need some love and care, and nothing is going right. Keep yourself together, and call our name (DS) out loud, and soon we'll come a knockin at your door. Yes, that is from Carole King's &quot;You've got a friend.&quot; You write whenever you need, we are here for you and WE DO understand.

I have suffered from Ulcerative Colitis for well over 10 years. It has got worse since the birth of my 2nd child 5 years ago. For me this is very much a mental illness as well as a physical one. I have had trouble coming to terms with having the disease and in turn have never treated it, i keep trying to pretend i am fine. I am scared to take treatment as i don't want to be dependant on drugs. I try and ask the doctor about alternate therapy but they wont talk to me about it.
I am to scared to go for a colonoscopy, and have only ever had a sigmoidoscopy which showed i had left sided colitis. I have had an ultra sound scan which didn't show up anything.

Everyday for me is a battle, i am depressed, i feel suicidal somedays. It has taken over my life and i don't know what to do. I have back pain and left sided colic like pain everyday, along with blood and mucus, sometimes loose stools, sometimes not. It varies so much, i can't work, i have developed anxiety, where do i turn from here?

MrBadGuy, please don't be afraid of a colonoscopy. It is such an easy and safe procedure. You literally get wheeled into the room and wheeled out. You don't remember anything or suffer any pain. The worst part is just purging, but if you ask your doctor for anti-nausea meds, it's not that bad.

I've had a colonoscopy, endoscopy, and will have a single balloon enteroscopy on Tuesday. I have CD in my jejunum and ileum and they think I have strictures in my jejunum so the enteroscopy is to find those and (hopefully) stretch them. I hate to be gross, but if I had to choose between having a scope up my backside or one down my throat, I would choose the backside every time.

And mrbadguy, don't be afraid to try medical treatment. The first line course of treatment often works for many many UC sufferers. You don't read/see them on here much because they are the ones feeling fine. I'd encourage you to give it a try.

Mrbadguy, Chrissymatt and mmccaus are right. Get the colonoscopy, get some good medical treatments. You will feel so much better. have you tried any type of therapy or talking to some one that can help? No one should feel as sad and depressed as you say you are. Everybody's got something; you are not alone. We are all here for you and each other. Hugs!

I feel sorry for you guys being sick for years and years. I was diagnosed with UC in 2006 and by 2007 I had my colon/rectum removed with a j-pouch. I feel soooo much better. I still have to watch what I eat (spicy foods burn coming out, ouch!) and I still have more BM's than the average person 5 or so. But no more meds, no more bloody diarrhea, no more worrying that I would have an accident, and no more hospital and doctor visits! Yeah...I suppose surgery is not for everybody, I cried like a baby for a week when the GI doc brought it up, but I will be going in for my 1 year follow-up with my surgeon and I can now say that I am glad I did it. (There were complications and nastiness but overall it was a positive change)

hi Mary. Few questions. Are you eating? are you drinking fluids and able to keep them (not losing them from toilet visits or vomiting?)
I dont mean to frighten you nor am i sensationalising my illness but last year i WAS dyingfrom dehydration and malnutition. I had severe diarrhoea and vomiting. I was confused and sleeping 23 hrs a day. I thought it was azathioprine that was making me feel that way it wasnt but it wasnt helping me either! I ended up in hospital for 2 months having blood and iron transfusions. My doc told me if i'd left it any longer or if they'd operated on me i'd have died, none of us realised i had been that bad now i do looking back and its scarey how long i left it til i went for help. If you trluy are worried and your having no good days at all go to the ER and get yourself all the tests you can, dont leave it and hope it goes away by itself cos it wont hun. Look after yourself and take care x

I agree with chrissymatt. Colonoscopy is the easiest one. I have had them all more than once. I hated the edg.

The worst part is drinking that liquid the night before. I refer to it as turpentine. I hated it so much that the last couple of times my doc let me take 30 laxitives with a bunch of water. That was much easier.

Proudmary, i understand what you are feeling. I have had such a hard time with my disease and the emotions from it, I got very depressed. I to thought I was dying. Now I try to stick to humor. I tell everyone at work that my guts are rotting out. Just take one day at a time and try to stay calm. It took me a bit to figure out how to do it, but I did. I still am sick every day, but I just ththink tomorrow will be better.

A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...

Today is my 25th birthday, to my somewhat lack of surprise I can see already no one really seems to care. I've always been the kinda person to make sure that everyone I Care about feels appreciated and knew somebody had their back. I can count 4 times this year when I Went out of my way to make sure a "friend" felt good on their birthday, especially if they got left hanging. Its early in the...

All content posted on this site is the responsibility of the party posting such content.
Participation on this site by a party does not imply endorsement of any other party's content,
products, or services. Content should not be used for medical advice, diagnosis, or treatment.